It's a subject pregnancy books tend to gloss over and prenatal classes frequently choose to ignore -- the possibility that you could give birth to a baby with special needs. Consequently, those couples who end up giving birth to these babies can find themselves feeling shocked and alone. Writer Ann Douglas, author of The Unofficial Guide to Having A Baby offers some advice in dealing with the unexpected. Feeling helpless
Monique Gibbons, 28, was shocked when her second child, Maddy, was born with Down Syndrome and a related congenital heart condition. Gibbons recalls what those first few days were like as she struggled to come to grips with this unexpected development. "I thought the world had crashed around me and I felt helpless. We had no inkling of her condition during our pregnancy and in one day we were informed that our daughter would not be the baby we had expected (a "perfect" baby) and, what's more, she was going to require open heart surgery.
"It was heartbreaking at first as we didn't know what to expect with the Down Syndrome. My advice to other parents who've just been faced with a scary diagnosis like this would be to try not to draw conclusions about your baby's diagnosis without researching what the condition really means, and to keep in mind that the condition, in all likelihood, will be different from child to child."
Like many couples who welcome babies with special needs, the Gibbons family had to contend with their daughter's extended hospitalization. While Gibbons commuted to the hospital to be with her daughter most days, there were times when she needed to take a break from the NICU environment. Because she couldn't bear the thought of Maddy being there on her own, Gibbons arranged for her mother to go and spend some time with the baby on days when she was taking a break. "That helped to ease my guilt a little, knowing that my mom would be there."
Another key challenge the Gibbons family faced during their daughter's early weeks of life was dealing with the reactions of other people. While family members have been generally very supportive, Gibbons is often startled by the reactions of some of the strangers she encounters while she's running errands with Maddy in tow.
Her message to these people is simple, yet direct. "I wish that other people would accept Maddy for who she is rather than just focusing on her Down Syndrome -- that they'd realize that a baby with special needs is a baby first and foremost. The condition is a secondary thing. I wish people would realize that parents love their children unconditionally and want society to accept their children for who they are. Every child is special, no matter what his or her limitations. A child with special needs is of no lesser value than any other child."